- Emma Murray, 24, was told of her son’s condition minutes after giving birth
- Aaron was diagnosed with rare health disorder called holoprosencephaly
- He was born with a brain stem so can move and breathe but not a full brain
- She was told Aaron could die in minutes and helped arrange baptism
- Two years on, Aaron has amazed doctors – and has spoken his first word
For any mother, hearing their baby’s first word is a momentous occasion. But for Emma Murray, it was a moment she thought would never happen with her youngest child Aaron.
When the two-year-old said ‘Mummy’, Emma, from Lanarkshire, Scotland, said it seemed like a miracle as her son was born with only the tiniest part of a brain.
Just minutes after giving birth in 2013, Emma, 24, was told by doctors that Aaron had a very rare health condition known as holoprosencephaly which they said left him ‘incompatible with life’.
Aaron was born with only a brain stem – which allows him to breathe and move – but does not have a full brain.
When two-year-old Aaron said ‘Mummy’, Emma, from Lanarkshire, Scotland, said it seemed like a miracle as her son was born with only the tiniest part of a brain
Emma was advised to invite her closest family to the hospital to meet her newborn boy before he passed away.
But more than two years on, Aaron is not only alive but enjoys giggling and clapping his hands with his big brother, Jack, aged three.
Aaron has amazed doctors so far with his survival – and the family were stunned when a few weeks ago, Aaron said ‘Mummy’ for the first time.
Emma said: ‘When Aaron was first born, I was told there was no way he could survive. I was told he might live for three minutes, three hours or three days.
‘The doctors told me if it had been any of his other organs which had failed to grow, they would have been able to do something but they couldn’t grow him another brain.
‘But right from the very beginning, Aaron proved he is a real fighter.
‘And I was saying “mummy” to him recently and clapping my hands and he was giggling away.
‘He looked at me, and said “mummy”. I couldn’t believe it. I’d been told my son would only live for a few minutes, but now here he was saying ‘mummy’ which is something I never thought I would ever hear.’
Aaron was born in March 2013 after Emma was rushed to hospital with what she thought was a burst appendix.
She said: ‘I didn’t know I was pregnant until I was in labour.
Just minutes after giving birth in 2013, Emma was told by doctors that Aaron had a very rare health condition known as holoprosencephaly which they said left him ‘incompatible with life’
This X-ray, which was taken when Aaron was born, shows that his brain stopped growing when it reached the circled point. Above it is where the brain would normally fill the skull cavity, but is instead filled with fluid
WHAT IS HOLOPROSENCEPHALY?
Holoprosencephaly is a condition in which the front part of the brain of an embryo fails to form two hemispheres.
The condition varies in severity but about 80 per cent of children with holoprosencephaly have facial abnormalities.
Almost all children with the condition experience developmental delays and many have seizures.
Most babies with the condition do not survive infancy.
The condition affects about one in 10,000 live-born babies.
Source: National Centre for Biotechnology Information
‘With my older son, I had been in no doubt I was pregnant but with Aaron, I had only put on a little weight, I had no sickness or cravings and my periods hadn’t stopped.
‘My mum and dad rushed me to Monklands hospital in the middle of the night, thinking I had an appendicitis. But as soon as the doctors and nurses examined me, they realised I was about to give birth.’
Emma was transferred by ambulance to Wishaw General Hospital where staff quickly realised her unborn baby had a larger head than most infants.
As soon as Aaron was born he was rushed to the neo-natal unit.
She said: ‘I was foggy from all the pain medication from the birth. But I could still see that his head was very large.
‘My stomach was knotted with anxiety, but all I could do was lie back and wait for some answers.’
A brain scan carried out on Aaron had revealed only his brain stem had properly formed, and three hours later, she was told the hospital could only give him palliative care.
He had Holoprosencephaly, a birth defect affecting the brain which occurs in approximately two in ten thousand births.
The condition can be mild or severe and in most cases, babies affected by the condition die before birth.
Emma said: ‘I was absolutely heartbroken. He was hooked up to every machine and had a hat over his head so we couldn’t see the size of it. I just sat by his cot rubbing his little hand. I was in total shock.
‘Everything had happened so fast – I didn’t even know I was pregnant, I’d given birth and been told my baby was going to die all in the same 24 hours.’
Hospital staff helped Emma organise a baptism for her son, but within hours, Aaron’s condition started to improve and they realised he could even breathe unaided.
Emma said: ‘For the first few days of Aaron’s life, it felt like everyone was just waiting for something bad to happen but Aaron had other ideas.
Emma said: ‘Everything had happened so fast – I didn’t even know I was pregnant, I’d given birth and been told my baby was going to die all in the same 24 hours.’ Hospital staff helped Emma organise a baptism for her son, but within hours, Aaron’s condition started to improve and they realised he could even breathe unaided’
‘The doctors explained that Aaron’s brain stem had developed, so he had limited functions. His internal organs worked and he could breathe, see and hear. It seemed like a miracle.
‘The doctors told me that he would never survive, and he might only be with us for a matter of minutes of hours.’
But a week later he was still fighting. He was transferred to Yorkhill Royal Hospital for Sick Children where he had surgery to have a shunt fitted into his head to drain some of the fluid.
I was absolutely heartbroken. He was hooked up to every machine and had a hat over his head so we couldn’t see the size of it. I just sat by his cot rubbing his little hand. I was in shock
After eight weeks at Yorkhill, he was allowed home and while he returns to hospital for regular check-ups, he keeps well.
She said: ‘Some days, we take one step forward and two steps back – but since he turned one, we have been taking more steps forward than back.’
And the most emotional moment came just six weeks ago when Aaron amazed Emma by saying ‘mummy’ for the first time.
She said: ‘I was just playing with him in my front room. He was lying on his back on the carpet and I was leaning over him clapping my hands, and saying “mummy” to him over and over, really drawing out the sounds.
‘He was giggling, and then he said “mummy”. He had literally copied what I was saying. I just stared at him in shock, and then I just burst into tears. It was such an emotional moment.
‘When Jack had said “mummy” for the first time, it was amazing, but this was even more special to me. I couldn’t believe it. Mum was with me too, sitting in the lounge. She was so shocked, she could hardly speak.
Emma says that Aaron is adored by his big brother Jack – who sings Twinkle Twinkle to him at night. ‘During the day, Aaron giggles away if Jack plays beside him and he giggles too if you clap his hands.’
‘AARON HAS GONE GONE BEYOND DOCTORS’ EXPECTATIONS’
Jill Yaz, from the Association for Spina Bifida and Hydrocephalus (SHINE) said: ‘This is an extremely rare condition and its fantastic that Aaron is going beyond any of the doctors expectations.
‘Because he has some brain stem it helps him to breathe and carry out basic functions – that’s how he manages to survive with no brain.
‘It is remarkable that he has managed to survive and say ‘mummy’ for the first time – it shows how little we really understand about how the human body works. And the body can surprise us and do remarkable things.
‘Children with this condition usually die before birth so the fact that he has even survived is remarkable. It’s a testament to his mother’s love that he is doing so well.’
‘Since then he’s also said “hello” a few times too. It really is remarkable.
‘We were told Aaron would always have the mental age of a newborn but we can see he is much more aware than that.
‘He is surrounded by love and you can see he likes to be involved in everything that is going on.
‘His big brother Jack adores him – and sings Twinkle Twinkle to him at night which makes him fall asleep.
‘During the day, Aaron giggles away if Jack plays beside him and he giggles too if you clap his hands.’
While Aaron can’t walk or support himself and they don’t know what vision he has, his family say he is very cuddly and tactile.
Emma, who is separated from Aaron’s father, said: ‘We don’t know what the future holds but we know Aaron is a happy, contented boy. Every moment we have with him is precious.
‘When he was first born I was encouraged to make a memory box, full of his things that I could treasure after he was gone. But now I don’t put anything in it and I don’t focus on what sad thing might happen in the future.
Aaron is not only alive but enjoys giggling and clapping his hands with his big brother, Jack, aged three
‘I never thought I would ever hear him say anything at all – I burst into tears when he said ‘mummy.’ It was the most amazing thing I’ve ever heard in my whole life.’
The family are planning a special Christmas celebration this year.
Emma said: ‘We are planning a huge family get together, and Aaron will be so excited as he loves being with people. He loves opening presents. I’m getting him a Peppa Pig teddy as he loves watching the programme on TV. ‘
Miracle baby Jaxon Buell shows off his walking and talking
THE BABY BORN MISSING MOST OF HIS BRAIN WHO DEFIED DOCTORS
A ‘miracle baby’ celebrated his first birthday in August despite missing most of his brain.
Born with most of his brain and skull missing, baby Jaxon Emmett Buell was not expected to live. In fact his parents had been told to abort him when doctors discovered his condition.
But he has defied all odds – and now he has just celebrated his first birthday.
Baby Jaxon’s devout Christian parents, Brandon and Brittany Buell, were told by doctors that he had an extreme brain malformation, which meant he would probably not survive the pregnancy.
But Jax Strong – a nickname he has earned on social media – is now one years old. His inspirational story has captivated families across the U.S., with nearly 90,000 people ‘liking’ his page on Facebook and 18,000 people sharing his story.
Baby Jaxon’s devout Christian parents, Brandon and Brittany Buell, were told by doctors that he had an extreme brain malformation, which meant he would probably not survive the pregnancy
His parents revealed the abuse they’ve received online as a result of their baby’s condition earlier this month.
Brandon Buell spoken out about the abuse he’s received after the inspirational story was shared on social media.
Brandon Buell’s son Jaxon was given only days to live at birth because of a rare neural-tube condition called Anencephaly seen while he was developing in the womb.
News of the child’s miraculous survival was read by hundreds of thousands after his first birthday in August, though some said that Brandon and his wife Brittany were ‘selfish’ or should have aborted the child to avoid the pain he will suffer.
Brandon responded to the criticism in a heartfelt Facebook post Saturday night, saying his wife and his decision to keep their son was ‘our choice, and only our choice’.
Read more: http://www.dailymail.co.uk/femail/article-3293259/Baby-born-without-brain-amazes-doctors-celebrating-second-birthday-says-Mummy-time.html#ixzz3ptOzxlJG
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